As a newcomer to TN you always read this info with dread for the future, but is it always true? Does anyone have an experience of Classic or ATN of this not being the case as to offer hope to those of us just starting out on this journey.
I've talked with people during the past 16 years who had been stable on a relatively low level of medication for several years. My wife would qualify as one of them. She's been well controlled first on Tegretol and later on Neurontin (at her own choice, to reduce strain on her liver), with minimal side effects, for over 14 years. Maren has a mixture of TN and ATN symptoms on both sides at different times. Neurontin knocks the "tip off the iceberg" for her, with a continuing background of low level achyness behind her right eye, and occasional jabs of TN in her left cheek. At 2700 mg per day of Neurontin, her only noticeable neurologic symptom of side effects is occasional word finding difficulty.
What I have NOT seen, however, is any patient who has accomplished a similar stable picture without the aid of medications or surgery. Realize, however, that I deal primarily with patients who hare having problems -- and it is less likely that I would talk with someone who isn't having problems. I can't say it doesn't happen. But my impression is that stable remission of well characterized TN-1 or TN-2 are unusual without medication.
One day at a time, Elstep.... one day at a time.
this is something I have wondered about as well...as I am a newby too. I have gone from 200mg of Tegretol daily to 300-400mg daily (100mg at a time) in the past 4 months. I know this is REALLY low, but hoping it will be able to stay at this level for a while. With cold weather coming on, flair ups are coming on easier / stronger / more frequently. Stress is also a factor...I am reading and getting my info from here mostly so I will be watching this blog a little closer as well...
I have ATN. Sometimes, it may take a while to find the right med combo. Many of us have found pain management through various meds. So, there is hope. But like an unwanted relative, nasty uninvited pain will come knocking unexpectedly. The future is unpredictable. We hear stories of better/worse scenarios for the future Gabapentin, Lamictal and Oxycodone have worked well for me. but meds work differently for each of us.. Keep a pain journal and by reading through site, you'll be well prepared for medical appointments. Don't go to the appoinments in the dark. Be a strong advocate for self. And when you start searching around the site, bring your lunch. Time slips by quickly when you do a site walk. Hang in there, you already know how cool the Living with TN community is.
Elstep - My pain has changed alot since the first, initial pains last Jan. However, either due to meds or due to the progression into ATN, I now have up to 4 or 5 days of mild pain (3 or 4) and then 2 or 3 days of constant terrible pain. I get more baffled by this disorder each day and unfortunately, I have yet to find a stable, permanent doctor for med treatment. I guess that if I have to go to every doctor in my state, I will, until I get one to work with me on monitoring and trying different combos of meds. That aside, my 4 or 5 days of mild pain are what keep me going and eternally grateful that this is not 24/7 for me. The pain was more on a daily basis at first, but not now and I can live thru the really painful days because it isn't every day. One doc told me I would just keep getting worse and worse because he wanted to do MVD. One neurosurgeon told me I would get better and better over time. I have no idea which is right or wrong.